Skip to main content

Palliative Care: End-of-Life Symptoms

  • Chapter
  • First Online:
The MASCC Textbook of Cancer Supportive Care and Survivorship

Abstract

Caring for people at the end of their life is an important aspect of palliative care. There are international variations in language. In the United Kingdom and Australia, hospice generally refers to a philosophy of care but also relates to inpatient care, whereas in the USA hospice care is generally community-based. Even the meaning of “end of life” can be confusing. The care of people approaching the end of their life is best provided by a multidisciplinary team. Caring for people with non-curative cancers is likely to be part of the work of medical and nursing staff in almost all areas of healthcare.

There will be times to seek specialist palliative care medical and nursing assistance or advice, but there is an imperative that generalists, including general practitioners or family physicians and oncologists, can provide a palliative approach to care when this is appropriate. For cancer patients and their treating physicians, one particularly challenging issue is if or when disease-modifying therapies should be ceased. Involvement of specialist palliative care and taking a palliative approach to care should be encouraged early, not merely at the end of active disease-modifying therapies. There is evidence that early involvement of palliative care may even have a survival benefit. Patients do expect their doctors to initiate conversations about end of life, and these conversations can reduce the use of intensive medical treatment at the end of life. If possible, it is best to avoid these discussions when the patient is acutely ill or distressed. It is also important to identify the onset of the terminal phase. The diagnosis of impending death is not always easy but is important to ensure appropriate care is provided.

Symptom control is a significant part of the healthcare interventions provided by a palliative care team. Physical symptoms are generally well recognized and have a considerable prevalence (e.g., lack of energy (73.4%), pain (63.1%), nausea (44.7%), lack of appetite (44.5%), constipation (33.6%), cough (29.4%), and shortness of breath (22.9%)). Psychological symptoms are much more challenging to elicit, and more controversy exists about what is normal and what might require intervention. Symptoms such as anxiety and depression may not be as easily acknowledged, diagnosed, or treated by patients, carers, or healthcare providers.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 129.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 169.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 249.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. World Health Organization. Cancer pain relief and palliative care: report of a WHO expert committee. Geneva: World Health Organization; 1990.

    Google Scholar 

  2. The concise Oxford dictionary of current English, Fowler H, Fowler F, Murray JA, editors. The concise Oxford dictionary of current English. 5th ed. Oxford: Oxford University Press; 1964.

    Google Scholar 

  3. Hui D, Mori M, Parsons HA, et al. The lack of standard definitions in the supportive and palliative oncology literature. J Pain Symptom Manag. 2012;43(3):582–92.

    Article  Google Scholar 

  4. General Medical Council UK. 2016. http://www.gmc-uk.org/guidance/ethical_guidance/end_of_life_glossary_of_terms.asp. Accessed 18 Dec 2016.

  5. Hui D, Nooruddin Z, Didwaniya N, et al. Concepts and definitions for “actively dying,” “end of life,” “terminally ill,” “terminal care,” and “transition of care”: a systematic review. J Pain Symptom Manag. 2014;47(1):77–89.

    Article  Google Scholar 

  6. Caresearch. Palliative care knowledge network Adelaide. 2016. https://www.caresearch.com.au/caresearch/tabid/738/Default.aspx. Accessed 18 Dec 2016.

  7. Crawford GB, Price SD. Team working: palliative care as a model of interdisciplinary practice. Med J Aust. 2003;179(6 Suppl):S32.

    PubMed  Google Scholar 

  8. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733–42. https://doi.org/10.1056/NEJMoa1000678.

    Article  CAS  PubMed  Google Scholar 

  9. Kirk P, Kirk I, Kristjanson LJ. What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. Br Med J. 2004;328(7452):1343. https://doi.org/10.1136/bmj.38103.423576.55.

    Article  Google Scholar 

  10. Moss AH, Lunney JR, Culp S, et al. Prognostic significance of the "surprise" question in cancer patients. J Palliat Med. 2010;13(7):837–40. https://doi.org/10.1089/jpm.2010.0018.

    Article  PubMed  Google Scholar 

  11. Highet G, Crawford D, Murray SA, et al. Development and evaluation of the supportive and palliative care indicators tool (SPICT): a mixed-methods study. BMJ Support Palliat Care. 2013. https://doi.org/10.1136/bmjspcare-2013-000488.

    Article  Google Scholar 

  12. Buccheri G, Ferrigno D, Tamburini M. Karnofsky and ECOG performance status scoring in lung cancer: a prospective, longitudinal study of 536 patients from a single institution. Eur J Cancer. 1996;32(7):1135–41. https://doi.org/10.1016/0959-8049(95)00664-8.

    Article  Google Scholar 

  13. Abernethy AP, Shelby-James T, Fazekas BS, et al. The Australia-modified Karnofsky performance status (AKPS) scale: a revised scale for contemporary palliative care clinical practice [ISRCTN81117481]. BMC Palliat Care. 2005;4(1):7. https://doi.org/10.1186/1472-684x-4-7.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Portenoy RK, Thaler HT, Kornblith AB, et al. The memorial symptom assessment scale: an instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer. 1994;30a(9):1326–36.

    Article  CAS  PubMed  Google Scholar 

  15. Razavi D, Delvaux N, Farvacques C, et al. Screening for adjustment disorders and major depressive disorders in cancer in-patients. Br J Psychiatry. 1990;156:79–83.

    Article  CAS  PubMed  Google Scholar 

  16. Barraclough JE. Psycho-oncology and the role of the psychiatrist in cancer patient care. Int J Psychiatry Clin Pract. 1997;1:189–95.

    Article  CAS  PubMed  Google Scholar 

  17. Dein S. The management of psychological distress in terminal illness. Prim Care Psychiatry. 2000;6:123–6.

    Article  Google Scholar 

  18. Derogatis LR, Morrow GR, Fetting J, et al. The prevalence of psychiatric disorders among cancer patients. J Am Med Assoc. 1983;249:751–7.

    Article  CAS  Google Scholar 

  19. Gilbody SM, House AO, Sheldon TA. Routinely administered questionnaires for depression and anxiety: systematic review. Br Med J. 2001;322:406–9.

    Article  CAS  Google Scholar 

  20. Henderson S, Andrews G, Hall W. Australia’s mental health: an overview of the general population survey. Aust N Z J Psychiatry. 2000;34:197–205.

    Article  CAS  PubMed  Google Scholar 

  21. Hardy JE, Hilmer SN. Deprescribing in the last year of life. J Pharm Pract Res. 2011;41(2):146–51. https://doi.org/10.1002/j.2055-2335.2011.tb00684.x.

    Article  Google Scholar 

  22. Lindsay J, Dooley M, Martin J, et al. The development and evaluation of an oncological palliative care deprescribing guideline: the ‘OncPal deprescribing guideline’. Support Care Cancer. 2015;23(1):71–8. https://doi.org/10.1007/s00520-014-2322-0.

    Article  PubMed  Google Scholar 

  23. Kelley AS, Reid MC, Miller DH, et al. Implantable cardioverter-defibrillator deactivation at the end of life: a physician survey. Am Heart J. 2009;157(4):702-08.e1. https://doi.org/10.1016/j.ahj.2008.12.011.

    Article  Google Scholar 

  24. Reisfield GM, Wilson GR. Rational use of sublingual opioids in palliative medicine. J Palliat Med. 2007;10(2):465–75. https://doi.org/10.1089/jpm.2006.0150.

    Article  PubMed  Google Scholar 

  25. Yap R, Akhileswaran R, Heng CP, et al. Comfort care kit: use of nonoral and nonparenteral rescue medications at home for terminally ill patients with swallowing difficulty. J Palliat Med. 2014;17(5):575–8. https://doi.org/10.1089/jpm.2013.0364.

    Article  PubMed  Google Scholar 

  26. Lindqvist O, Lundquist G, Dickman A, et al. Four essential drugs needed for quality care of the dying: a Delphi-study based international expert consensus opinion. J Palliat Med. 2013;16(1):38–43. https://doi.org/10.1089/jpm.2012.0205.

    Article  PubMed  Google Scholar 

  27. Tait P, Morris B, To T. Core palliative medicines: meeting the needs of non-complex community patients. Aust Fam Physician. 2014;43(1):29–32.

    PubMed  Google Scholar 

  28. Blinderman CD, Billings JA. Comfort care for patients dying in the hospital. N Engl J Med. 2015;373(26):2549–61. https://doi.org/10.1056/NEJMra1411746.

    Article  CAS  PubMed  Google Scholar 

  29. LeGrand SB, Walsh D. Comfort measures: practical care of the dying cancer patient. Am J Hosp Palliat Care. 2010;27(7):488–93. https://doi.org/10.1177/1049909110380200.

    Article  PubMed  Google Scholar 

  30. NHS Scotland. Scottish palliative care guidelines: care in the last days of life. 2014. http://www.palliativecareguidelines.scot.nhs.uk/guidelines/end-of-life-care/Care-in-the-Last-Days-of-Life.aspx. Accessed 13 Jan 2017.

  31. Palliative Care Expert Group. Terminal care: care in the last days of life. Therapeutic guidelines: palliative care. 4th version ed. Melbourne, Australia: Therapeutic Guidelines Limited; 2016. p. 359–86.

    Google Scholar 

  32. Costantini M, Alquati S, Di Leo S. End-of-life care: pathways and evidence. Curr Opin Support Palliat Care. 2014;8(4):399–404. https://doi.org/10.1097/spc.0000000000000099.

    Article  PubMed  Google Scholar 

  33. Hui D, Bruera E. A personalized approach to assessing and managing pain in patients with cancer. J Clin Oncol. 2014;32(16):1640–6. https://doi.org/10.1200/jco.2013.52.2508.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Abbey J, Piller N, De Bellis A, et al. The Abbey pain scale: a 1-minute numerical indicator for people with end-stage dementia. Int J Palliat Nurs. 2004;10(1):6–13. https://doi.org/10.12968/ijpn.2004.10.1.12013.

    Article  PubMed  Google Scholar 

  35. NHS Scotland. Scottish palliative care guidelines: choosing and changing opioids. 2014. http://www.palliativecareguidelines.scot.nhs.uk/guidelines/pain/choosing-and-changing-opioids.aspx. Accessed 13 Jan 2017.

  36. Palliative Care Expert Group. Pain: opioid therapy in palliative care. Therapeutic guidelines: palliative care. 4th version ed. Melbourne, Australia: Therapeutic Guidelines Limited; 2016. p. 207–33.

    Google Scholar 

  37. Ellershaw JE, Kinder C, Aldridge J, et al. Care of the dying: is pain control compromised or enhanced by continuation of the fentanyl transdermal patch in the dying phase? J Pain Symptom Manag. 2002;24(4):398–403.

    Article  CAS  Google Scholar 

  38. Portenoy RK, Ahmed E. Principles of opioid use in cancer pain. J Clin Oncol. 2014;32(16):1662–70. https://doi.org/10.1200/jco.2013.52.5188.

    Article  CAS  PubMed  Google Scholar 

  39. Morita T, Tsunoda J, Inoue S, et al. Effects of high dose opioids and sedatives on survival in terminally ill cancer patients. J Pain Symptom Manag. 2001;21(4):282–9.

    Article  CAS  Google Scholar 

  40. P.D.Q. Supportive, Palliative Care Editorial Board. Cancer Pain (PDQ(R)): Health Professional Version. Bethesda, MD: National Cancer Institute (US); 2002. https://www.cancer.gov/about-cancer/treatment/side-effects/pain/pain-hp-pdq. Accessed 13 Jan 2017.

  41. Bruera E, Hui D, Dalal S, et al. Parenteral hydration in patients with advanced cancer: a multicenter, double-blind, placebo-controlled randomized trial. J Clin Oncol. 2013;31(1):111–8. https://doi.org/10.1200/jco.2012.44.6518.

    Article  PubMed  Google Scholar 

  42. Hui D, Dev R, Bruera E. The last days of life: symptom burden and impact on nutrition and hydration in cancer patients. Curr Opin Support Palliat Care. 2015;9(4):346–54. https://doi.org/10.1097/spc.0000000000000171.

    Article  PubMed  PubMed Central  Google Scholar 

  43. Caraceni A, Hanks G, Kaasa S, et al. Use of opioid analgesics in the treatment of cancer pain: evidence-based recommendations from the EAPC. Lancet Oncol. 2012;13(2):e58–68. https://doi.org/10.1016/s1470-2045(12)70040-2.

    Article  CAS  PubMed  Google Scholar 

  44. P.D.Q. Supportive, Palliative Care Editorial Board. Last Days of Life (PDQ(R)): Health Professional Version. Bethesda, MD: National Cancer Institute (US); 2002. https://www.cancer.gov/about-cancer/advanced-cancer/caregivers/planning/last-days-hp-pdq. Accessed 13 Jan 2017.

  45. Dean M. Opioids in renal failure and dialysis patients. J Pain Symptom Manag. 2004;28(5):497–504. https://doi.org/10.1016/j.jpainsymman.2004.02.021.

    Article  CAS  Google Scholar 

  46. Hanna M. The effects of liver impairment on opioids used to relieve pain in cancer patients. Palliat Med. 2011;25(5):604–5. https://doi.org/10.1177/0269216311401642.

    Article  PubMed  Google Scholar 

  47. Rhee C, Broadbent AM. Palliation and liver failure: palliative medications dosage guidelines. J Palliat Med. 2007;10(3):677–85. https://doi.org/10.1089/jpm.2006.0246.

    Article  PubMed  Google Scholar 

  48. Armstrong TS, Ying Y, Wu J, et al. The relationship between corticosteroids and symptoms in patients with primary brain tumors: utility of the dexamethasone symptom questionnaire–chronic. Neuro-Oncology. 2015. https://doi.org/10.1093/neuonc/nov054.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  49. Haywood A, Good P, Khan S, et al. Corticosteroids for the management of cancer-related pain in adults. Cochrane Database Syst Rev. 2015;(4):CD010756. https://doi.org/10.1002/14651858.CD010756.pub2.

  50. Vardy J, Agar M. Nonopioid drugs in the treatment of cancer pain. J Clin Oncol. 2014;32(16):1677–90. https://doi.org/10.1200/JCO.2013.52.8356.

    Article  CAS  PubMed  Google Scholar 

  51. Glare P, Miller J, Nikolova T, et al. Treating nausea and vomiting in palliative care: a review. Clin Interv Aging. 2011;6:243–59.

    Article  PubMed  PubMed Central  Google Scholar 

  52. Clark K, Connolly A, Clapham S, et al. Physical symptoms at the time of dying was diagnosed: a consecutive cohort study to describe the prevalence and intensity of problems experienced by imminently dying palliative care patients by diagnosis and place of care. J Palliat Med. 2016;19(12):1288–95. https://doi.org/10.1089/jpm.2016.0219.

    Article  PubMed  Google Scholar 

  53. Hui D, Morgado M, Chisholm G, et al. High-flow oxygen and bilevel positive airway pressure for persistent dyspnea in patients with advanced cancer: a phase II randomized trial. J Pain Symptom Manag. 2013;46(4):463–73. https://doi.org/10.1016/j.jpainsymman.2012.10.284.

    Article  Google Scholar 

  54. Galbraith S, Fagan P, Perkins P, et al. Does the use of a handheld fan improve chronic dyspnea? A randomized, controlled, crossover trial. J Pain Symptom Manag. 2010;39(5):831–8. https://doi.org/10.1016/j.jpainsymman.2009.09.024.

    Article  Google Scholar 

  55. Zhao I, Yates P. Non-pharmacological interventions for breathlessness management in patients with lung cancer: a systematic review. Palliat Med. 2008;22(6):693–701. https://doi.org/10.1177/0269216308095024.

    Article  CAS  PubMed  Google Scholar 

  56. Abernethy AP, McDonald CF, Frith PA, et al. Effect of palliative oxygen versus room air in relief of breathlessness in patients with refractory dyspnoea: a double-blind, randomised controlled trial. Lancet. 2010;376(9743):784–93. https://doi.org/10.1016/s0140-6736(10)61115-4.

    Article  PubMed  PubMed Central  Google Scholar 

  57. Barnes H, McDonald J, Smallwood N, et al. Opioids for the palliation of refractory breathlessness in adults with advanced disease and terminal illness. Cochrane Database Syst Rev. 2016;3:CD011008. https://doi.org/10.1002/14651858.CD011008.pub2.

    Article  PubMed  Google Scholar 

  58. Allard P, Lamontagne C, Bernard P, et al. How effective are supplementary doses of opioids for dyspnea in terminally ill cancer patients? A randomized continuous sequential clinical trial. J Pain Symptom Manag. 1999;17(4):256–65.

    Article  CAS  Google Scholar 

  59. Navigante AH, Cerchietti LC, Castro MA, et al. Midazolam as adjunct therapy to morphine in the alleviation of severe dyspnea perception in patients with advanced cancer. J Pain Symptom Manag. 2006;31(1):38–47. https://doi.org/10.1016/j.jpainsymman.2005.06.009.

    Article  CAS  Google Scholar 

  60. Simon ST, Higginson IJ, Booth S, et al. Benzodiazepines for the relief of breathlessness in advanced malignant and non-malignant diseases in adults. Cochrane Database Syst Rev. 2016;10:CD007354. https://doi.org/10.1002/14651858.CD007354.pub3.

    Article  PubMed  Google Scholar 

  61. Hardy JR, Rees E, Ling J, et al. A prospective survey of the use of dexamethasone on a palliative care unit. Palliat Med. 2001;15(1):3–8. https://doi.org/10.1191/026921601673324846.

    Article  CAS  PubMed  Google Scholar 

  62. P.D.Q. Supportive, Palliative Care Editorial Board. Delirium (PDQ(R)): Health Professional Version. Bethesda, MD: National Cancer Institute (US); 2002. https://www.cancer.gov/about-cancer/treatment/side-effects/memory/delirium-hp-pdq. Accessed 13 Jan 2017.

  63. Lawlor PG, Gagnon B, Mancini IL, et al. Occurrence, causes, and outcome of delirium in patients with advanced cancer: a prospective study. Arch Intern Med. 2000;160(6):786–94.

    Article  CAS  PubMed  Google Scholar 

  64. Leonard MM, Nekolaichuk C, Meagher DJ, et al. Practical assessment of delirium in palliative care. J Pain Symptom Manag. 2014;48(2):176–90. https://doi.org/10.1016/j.jpainsymman.2013.10.024.

    Article  Google Scholar 

  65. Bush SH, Kanji S, Pereira JL, et al. Treating an established episode of delirium in palliative care: expert opinion and review of the current evidence base with recommendations for future development. J Pain Symptom Manag. 2014;48(2):231–48. https://doi.org/10.1016/j.jpainsymman.2013.07.018.

    Article  Google Scholar 

  66. Agar MR, Quinn SJ, Crawford GB, et al. Predictors of mortality for delirium in palliative care. J Palliat Med. 2016;19(11):1205–9. https://doi.org/10.1089/jpm.2015.0416.

    Article  PubMed  Google Scholar 

  67. Bruera E, Bush SH, Willey J, et al. Impact of delirium and recall on the level of distress in patients with advanced cancer and their family caregivers. Cancer. 2009;115(9):2004–12. https://doi.org/10.1002/cncr.24215.

    Article  PubMed  Google Scholar 

  68. Bush SH, Leonard MM, Agar M, et al. End-of-life delirium: issues regarding recognition, optimal management, and the role of sedation in the dying phase. J Pain Symptom Manag. 2014;48(2):215–30. https://doi.org/10.1016/j.jpainsymman.2014.05.009.

    Article  Google Scholar 

  69. Lokker ME, van Zuylen L, van der Rijt CC, et al. Prevalence, impact, and treatment of death rattle: a systematic review. J Pain Symptom Manag. 2014;47(1):105–22. https://doi.org/10.1016/j.jpainsymman.2013.03.011.

    Article  Google Scholar 

  70. Mercadamte S. Death rattle: critical review and research agenda. Support Care Cancer. 2014;22(2):571–5. https://doi.org/10.1007/s00520-013-2047-5.

    Article  PubMed  Google Scholar 

  71. Twomey S, Dowling M. Management of death rattle at end of life. Br J Nurs. 2013;22(2):81–5. https://doi.org/10.12968/bjon.2013.22.2.81.

    Article  PubMed  Google Scholar 

  72. Heisler M, Hamilton G, Abbott A, et al. Randomized double-blind trial of sublingual atropine vs. placebo for the management of death rattle. J Pain Symptom Manag. 2013;45(1):14–22. https://doi.org/10.1016/j.jpainsymman.2012.01.006.

    Article  CAS  Google Scholar 

  73. Wee B, Hillier R. Interventions for noisy breathing in patients near to death. Cochrane Database Syst Rev. 2008;(1):CD005177. https://doi.org/10.1002/14651858.CD005177.pub2.

  74. Clark K, Currow DC, Agar M, et al. A pilot phase II randomized, cross-over, double-blinded, controlled efficacy study of octreotide versus hyoscine hydrobromide for control of noisy breathing at the end-of-life. J Pain Palliat Care Pharmacother. 2008;22(2):131–8.

    Article  PubMed  Google Scholar 

  75. Wildiers H, Dhaenekint C, Demeulenaere P, et al. Atropine, hyoscine butylbromide, or scopolamine are equally effective for the treatment of death rattle in terminal care. J Pain Symptom Manag. 2009;38(1):124–33. https://doi.org/10.1016/j.jpainsymman.2008.07.007.

    Article  CAS  Google Scholar 

  76. Pereira J, Phan T. Management of bleeding in patients with advanced cancer. Oncologist. 2004;9(5):561–70. https://doi.org/10.1634/theoncologist.9-5-561.

    Article  PubMed  Google Scholar 

  77. Palliative Care Expert Group. Genitourinary symptoms. Therapeutic guidelines: palliative care. 4th version ed. Melbourne, Australia: Therapeutic Guidelines Limited; 2016. p. 339–48.

    Google Scholar 

  78. Harris DG, Noble SI. Management of terminal hemorrhage in patients with advanced cancer: a systematic literature review. J Pain Symptom Manag. 2009;38(6):913–27. https://doi.org/10.1016/j.jpainsymman.2009.04.027.

    Article  Google Scholar 

  79. Koekkoek JA, Dirven L, Sizoo EM, et al. Symptoms and medication management in the end of life phase of high-grade glioma patients. J Neuro-Oncol. 2014;120(3):589–95. https://doi.org/10.1007/s11060-014-1591-2.

    Article  CAS  Google Scholar 

  80. Koekkoek JA, Chang S, Taphoorn MJ. Palliative care at the end-of-life in glioma patients. Handb Clin Neurol. 2016;134:315–26. https://doi.org/10.1016/b978-0-12-802997-8.00019-0.

    Article  PubMed  Google Scholar 

  81. Sizoo EM, Koekkoek JA, Postma TJ, et al. Seizures in patients with high-grade glioma: a serious challenge in the end-of-life phase. BMJ Support Palliat Care. 2014;4(1):77–80. https://doi.org/10.1136/bmjspcare-2013-000456.

    Article  PubMed  Google Scholar 

  82. Glantz MJ, Cole BF, Forsyth PA, et al. Practice parameter: anticonvulsant prophylaxis in patients with newly diagnosed brain tumors. Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2000;54(10):1886–93.

    Article  CAS  PubMed  Google Scholar 

  83. Dulin JD, Noreika DM, Coyne PJ. Management of refractory status epilepticus in an actively dying patient. J Pain Palliat Care Pharmacother. 2014;28(3):243–50. https://doi.org/10.3109/15360288.2014.941129.

    Article  PubMed  Google Scholar 

  84. NHS Scotland. Scottish palliative care guidelines: severe uncontrolled distress. 2014. http://www.palliativecareguidelines.scot.nhs.uk/guidelines/end-of-life-care/severe-uncontrolled-distress.aspx. Accessed 13 Jan 2017.

  85. Best M, Aldridge L, Butow P, et al. Treatment of holistic suffering in cancer: a systematic literature review. Palliat Med. 2015;29(10):885–98. https://doi.org/10.1177/0269216315581538.

    Article  PubMed  Google Scholar 

  86. Holland JC, Alici Y. Management of distress in cancer patients. J Support Oncol. 2010;8(1):4–12.

    PubMed  Google Scholar 

  87. Breitbart W, Rosenfeld B, Pessin H, et al. Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. J Am Med Assoc. 2000;284(22):2907–11.

    Article  CAS  Google Scholar 

  88. Chochinov HM, Wilson KG, Enns M, et al. “Are you depressed?” screening for depression in the terminally ill. Am J Psychiatry. 1997;154(5):674–6. https://doi.org/10.1176/ajp.154.5.674.

    Article  CAS  PubMed  Google Scholar 

  89. Jaiswal R, Alici Y, Breitbart W. A comprehensive review of palliative care in patients with cancer. Int Rev Psychiatry. 2014;26(1):87–101. https://doi.org/10.3109/09540261.2013.868788.

    Article  PubMed  Google Scholar 

  90. Lloyd-Williams M, Friedman T, Rudd N. A survey of antidepressant prescribing in the terminally ill. Palliat Med. 1999;13(3):243–8.

    Article  CAS  PubMed  Google Scholar 

  91. Lloyd-Williams M. Are antidepressants effective in cancer patients? Prog Palliat Care. 2004;12:217–9.

    Article  Google Scholar 

  92. Wilson KG, Chochinov HM, Skirko MG, et al. Depression and anxiety disorders in palliative cancer care. J Pain Symptom Manag. 2007;33(2):118–29. https://doi.org/10.1016/j.jpainsymman.2006.07.016.

    Article  Google Scholar 

  93. Lo B, Ruston D, Kates LW, et al. Discussing religious and spiritual issues at the end of life: a practical guide for physicians. J Am Med Assoc. 2002;287(6):749–54.

    Article  Google Scholar 

  94. Sulmasy DP. Spiritual issues in the care of dying patients: “... it’s okay between me and God”. J Am Med Assoc. 2006;296(11):1385–92. https://doi.org/10.1001/jama.296.11.1385.

    Article  CAS  Google Scholar 

  95. Clark K, Phillips J. End of life care—the importance of culture and ethnicity. Aust Fam Physician. 2010;39(4):210–3.

    PubMed  Google Scholar 

  96. Hallenbeck J, Arnold R. A request for nondisclosure: don’t tell mother. J Clin Oncol. 2007;25(31):5030–4. https://doi.org/10.1200/jco.2007.11.8802.

    Article  PubMed  Google Scholar 

  97. Hudson P, Quinn K, O'Hanlon B, et al. Family meetings in palliative care: multidisciplinary clinical practice guidelines. BMC Palliat Care. 2008;7:12. https://doi.org/10.1186/1472-684x-7-12.

    Article  PubMed  PubMed Central  Google Scholar 

  98. Rabow MW, Hauser JM, Adams J. Supporting family caregivers at the end of life: “they don’t know what they don’t know”. J Am Med Assoc. 2004;291(4):483–91. https://doi.org/10.1001/jama.291.4.483.

    Article  CAS  Google Scholar 

  99. Quill TE. Perspectives on care at the close of life. Initiating end-of-life discussions with seriously ill patients: addressing the “elephant in the room”. J Am Med Assoc. 2000;284(19):2502–7.

    Article  Google Scholar 

  100. Branigan M. Desire for hastened death: exploring the emotions and the ethics. Curr Opin Support Palliat Care. 2015;9(1):64–71. https://doi.org/10.1097/spc.0000000000000109.

    Article  PubMed  Google Scholar 

  101. Hudson PL, Schofield P, Kelly B, et al. Responding to desire to die statements from patients with advanced disease: recommendations for health professionals. Palliat Med. 2006;20(7):703–10. https://doi.org/10.1177/0269216306071814.

    Article  PubMed  Google Scholar 

  102. Onwuteaka-Philipsen BD, Rurup ML, Pasman HR, et al. The last phase of life: who requests and who receives euthanasia or physician-assisted suicide? Med Care. 2010;48(7):596–603. https://doi.org/10.1097/MLR.0b013e3181dbea75.

    Article  PubMed  Google Scholar 

  103. Olsen ML, Swetz KM, Mueller PS. Ethical decision making with end-of-life care: palliative sedation and withholding or withdrawing life-sustaining treatments. Mayo Clin Proc. 2010;85(10):949–54. https://doi.org/10.4065/mcp.2010.0201.

    Article  PubMed  PubMed Central  Google Scholar 

  104. Higginson IJ, Sen-Gupta GJ. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med. 2000;3(3):287–300. https://doi.org/10.1089/jpm.2000.3.287.

    Article  CAS  PubMed  Google Scholar 

  105. Foreman LM, Hunt RW, Luke CG, et al. Factors predictive of preferred place of death in the general population of South Australia. Palliat Med. 2006;20(4):447–53.

    Article  PubMed  Google Scholar 

  106. Gomes B, Calanzani N, Koffman J, et al. Is dying in hospital better than home in incurable cancer and what factors influence this? A population-based study. BMC Med. 2015;13:235. https://doi.org/10.1186/s12916-015-0466-5.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  107. Fischer S, Min SJ, Cervantes L, et al. Where do you want to spend your last days of life? Low concordance between preferred and actual site of death among hospitalized adults. J Hosp Med. 2013;8(4):178–83. https://doi.org/10.1002/jhm.2018.

    Article  PubMed  Google Scholar 

  108. Sharpe L, Butow P, Smith C, et al. The relationship between available support, unmet needs and caregiver burden in patients with advanced cancer and their carers. Psycho-Oncology. 2005;14(2):102–14. https://doi.org/10.1002/pon.825.

    Article  PubMed  Google Scholar 

  109. Ellershaw J, Ward C. Care of the dying patient: the last hours or days of life. Br Med J. 2003;326(7379):30–4.

    Article  Google Scholar 

  110. Murray SA, Grant E, Grant A, et al. Dying from cancer in developed and developing countries: lessons from two qualitative interview studies of patients and their carers. Br Med J. 2003;326(7385):368.

    Article  Google Scholar 

  111. Crawford GB. Palliative care on Kangaroo Island. Aust J Rural Health. 2000;8(1):35–40.

    Article  CAS  PubMed  Google Scholar 

  112. Rhodes P, Shaw S. Informal care and terminal illness. Health Soc Care Community. 1999;7(1):39–50.

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Gregory B. Crawford .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2018 Springer International Publishing AG, part of Springer Nature

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Crawford, G.B., Hauser, K.A., Jansen, W.I. (2018). Palliative Care: End-of-Life Symptoms. In: Olver, I. (eds) The MASCC Textbook of Cancer Supportive Care and Survivorship. Springer, Cham. https://doi.org/10.1007/978-3-319-90990-5_5

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-90990-5_5

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-90989-9

  • Online ISBN: 978-3-319-90990-5

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics